ORIGINAL RESEARCH

Promoting Patient and Family Partnershipsin Ambulatory Care Improvement: A Narrative Reviewand Focus Group Findings

Karin E. Johnson . Tracy M. Mroz . Marie Abraham . Marlaine Figueroa Gray .

Mary Minniti . Wendy Nickel . Robert Reid . Jennifer Sweeney .

Dominick L. Frosch . Debra L. Ness . Clarissa Hsu

Received: March 21, 2016 / Published online: June 28, 2016� The Author(s) 2016. This article is published with open access at Springerlink.com

ABSTRACT

Introduction: Ambulatory practices that

actively partner with patients and families in

quality improvement (QI) report benefits such

as better patient/family interactions with

physicians and staff, and patient

empowerment. However, creating effective

patient/family partnerships for ambulatory

care improvement is not yet routine. The

objective of this paper is to provide practices

with concrete evidence about meaningfully

involving patients and families in QI activities.

Methods: Review of literature published from

2000–2015 and a focus group conducted in

2014 with practice advisors.

Results: Thirty articles discussed 26 studies or

examples of patient/family partnerships in

ambulatory care QI. Patient and family

partnership mechanisms included QI

committees and advisory councils. Facilitators

included process transparency, mechanisms for

acting on patient/family input, and

compensation. Challenges for practices

included uncertainty about how best to

involve patients and families in QI. Several

studies found that patient/family partnership

was a catalyst for improvement and reported

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Electronic supplementary material The onlineversion of this article (doi:10.1007/s12325-016-0364-z)contains supplementary material, which is available toauthorized users.

K. E. Johnson (&) � M. Figueroa Gray � C. HsuGroup Health Research Institute, Seattle, WA, USAe-mail: karinjohnso@gmail.com

T. M. MrozUniversity of Washington, Seattle, WA, USA

M. Abraham � M. MinnitiInstitute for Patient- and Family-Centered Care,Bethesda, MD, USA

W. NickelAmerican College of Physicians, Philadelphia, PA,USA

R. ReidTrillium Health Partners, Mississauga, ON, Canada

J. Sweeney � D. L. NessNational Partnership for Women and Families,Washington, DC, USA

D. L. FroschPAMF Research Institute, Palo Alto, CA, USA

Adv Ther (2016) 33:1417–1439

DOI 10.1007/s12325-016-0364-z

that partnerships resulted in process

improvements. Focus group results were

concordant.

Conclusion: This paper describes emergent

mechanisms and processes that ambulatory

care practices use to partner with patients and

families in QI including outcomes, facilitators,

and challenges.

Funding: Gordon and Betty Moore Foundation.

Keywords: Ambulatory care; Family

engagement; Partnership; Patient engagement;

Practice advisors; Quality improvement

INTRODUCTION

Improving patient and family centeredness is a

key component of achieving the healthcare

triple aim of improving population health and

the care experience, and reducing costs of care

[1]. The Affordable Care Act [2] emphasizes

patient and family engagement, using the

phrase ‘‘patient-centered’’ at least 40 times and

supporting the transformation of primary care

ambulatory practices to patient-centered

medical homes (PCMHs). With the rapid

spread of the PCMH model [3], ambulatory

practices are seeking ways to redefine

relationships with patients and families [4].

Carman et al. [47] developed a framework for

better understanding definitions and

mechanisms of patient engagement. In this

framework, the ‘‘partnership’’ role is

substantive, going beyond consultation and

involvement and ranging from collaborative

clinical visits (direct care level), to co-leading a

quality improvement (QI) committee

(organizational design and governance), and

developing new policies and programs together

with patients/families (policy making). In this

paper, we focus on organizational design and

governance partnerships in ambulatory

settings, specifically in QI.

QI in ambulatory care is typically conducted

by a team or committee that reviews

performance data, identifies improvement

opportunities and undertakes QI initiatives [5].

Practices may also have advisory councils that

make recommendations on better meeting

patient/family needs. Council members share

insights and experiences and collaborate with

practice leaders and staff on specific QI efforts

such as redesigning patient educational

materials, creating patient portals for

electronic health records or advising on health

facility design [6]. We refer to patients and

family members serving on QI or advisory

committees or in other ambulatory care QI

partnerships as ‘‘practice advisors.’’ Practice

advisors have first-hand perspectives about

patient/family needs and priorities. They

provide a fresh view on the challenges that

healthcare professionals face in healthcare

redesign [7].

Analyses of practices undergoing PCMH

transformation show that most obtain patient

input, such as through surveys; however, few

systematically involve patients and families as

QI partners. Practices that actively engage

practice advisors report benefits such as better

patient/family interactions with physicians and

staff, and patient empowerment [8]. However,

creating effective patient/family partnerships

for ambulatory care improvement is not yet

routine.

Practices might hesitate to involve patients

and families in improvement because evidence

and practical guidance regarding best practices

and expected outcomes are lacking [9]. The

traditional paradigm of physician autonomy

and control in medical decision-making means

care is not structured to promote patient and

family partnerships [10]. Patient/family QI

1418 Adv Ther (2016) 33:1417–1439

partnerships can be new territory for practices

and patients.

Organizations such as the Institute for

Patient- and Family-Centered Care (IPFCC),

National Partnership for Women and Families

(NPWF), and the Patient-Centered Primary Care

Collaborative have been advocating for the

inclusion of patients and families in

ambulatory care QI. However, additional

evidence and guidance are needed to support

patient/family partnerships and disseminate

their results so they become standard practice

in ambulatory care settings.

To provide practices with concrete evidence

about meaningfully involving patients and

families in QI activities, this paper describes

emergent mechanisms and processes that

ambulatory care practices use to partner with

patients and families in QI including outcomes,

facilitators, and challenges. The focus on adult

ambulatory care adds to the literature on

partnerships in inpatient care and pediatric

PCMHs [11].

METHODS

We conducted a targeted, narrative literature

review to identify partnership activities,

outcomes, barriers and challenges. We also

elicited first-hand perspectives by conducting a

focus group with ambulatory care practice

advisors.

Targeted Narrative Review

The questions that the narrative review was

designed to answer were: (1) what QI

partnership activities exist at ambulatory care

practices?; (2) what are the facilitators and

challenges of such partnerships?; and (3) what

are the outcomes? Article inclusion criteria

were: explicit discussion of patient/family

partnership activities in practice design; focus

on generalist adult ambulatory practice; and

publication in English between January 1, 2000

and April 1, 2015. Exclusion criteria were a

focus only on direct care (e.g., shared

decision-making) or healthcare policy or

one-time involvement/consultation. Articles

were required to describe specific QI activities

at one or more organizations. However, because

one objective of the study was to identify

existing partnership activities, no restrictions

were placed on study design.

PubMed and Ebsco searches identified

peer-reviewed articles. Initial search terms were

based on team knowledge and key words from

seminal articles and reports, with iterative

refinement after team review. PubMed was

searched for ‘‘patient partnership’’ and variants

(collaboration, involvement, participation,

engagement, and partner) and ‘‘patient

advisory council’’ and variants (group,

committee) in titles or abstracts. Ebsco was

searched for ‘‘patient’’ and ‘‘engagement’’ in

titles only based on initial PubMed results.

‘‘Engagement’’ was used instead of

‘‘partnership’’ because it covers a broader body

of research. For both databases, we applied

limiting terms for titles or abstracts to focus

on ambulatory care (limiting terms: ambulatory

care, primary care, family practice, outpatient

and medical home) and organizational design

and governance (limiting terms: practice,

design, redesign, transformation, QI, quality

initiative, and process improvement) versus

direct care. We reviewed published and

unpublished recommendations from our team

and project advisors and citations from other

articles.

Abstracts of all identified articles were

reviewed. When abstracts were not available or

lacked sufficient detail, full-text articles were

reviewed. Two abstractors (TM, KJ), using

Adv Ther (2016) 33:1417–1439 1419

structured Excel abstraction forms that captured

study design, setting, partnership structure and

activities, facilitators and challenges, and

results, reviewed two rounds of 50 articles

each for training and inter-rater reliability.

Concordance improved from the first test set

(kappa = 0.38; 95% confidence interval [CI]

0.02–0.75) to the second (kappa = 0.7; 95% CI

0.41–0.98). Disagreements were discussed and

resolved. Remaining abstracts were assessed by

one reviewer, consulting with a second reviewer

only in cases of doubt about articles meeting

inclusion criteria.

Focus Group

A telephone-based focus group was conducted

in 2014 with a purposive sample of highly

experienced practice advisors recommended by

IPFCC and NPWF, two organizations that

frequently work closely with practice advisors.

Participants were eligible if they spoke English,

worked as an advisor for at least 6 months, and

were not providers or staff members at the

advised organization. Of 12 invitees, 10 patient

advisors participated, with equal numbers of

men and women, aged 35–74 years. Most

advised practices that primarily served adults.

The group was facilitated by two team members

with training and experience in qualitative

research and in-person and telephonic focus

groups.

The focus group explored the experiences of

current practice advisors. A guide (see the

supplementary material) was designed to elicit

insights from participants’ experience, ideas

about how ambulatory practices can prepare to

work effectively with patient/family advisors in

practice redesign and QI, and advice on

encouraging and supporting patients and

families in this role.

The focus group was recorded and

transcribed. The team reviewed transcripts and

discussed major themes. One author (KJ) coded

the transcript in Atlas.ti based on a combination

of a priori/template codes (drawing on focus

group guide questions, e.g., on roles, practice

advisor preparation, what went well, suggestions

for improvement) and codes that emerged from

the data [12]. The primary coder summarized

major themes; another author (MM) read

transcripts, reviewed the summary, and made

adjustments after discussion.

Compliance with Ethics Guidelines

The Group Health human subjects review office

determined that the procedures were exempt

from IRB review. US regulations pertaining to

human subjects research include provisions for

exemption from Institutional Review Board

review when research involves interviews that

are deidentified [46]. Because the focus

group occurred over the phone, no consent

forms were collected. However, as noted in the

focus group guide, participants were informed

that participation was voluntary, quotes would

be made anonymous, and that their insights will

help ‘‘in sharing what really works to support

patients and families in the role of advisors as

improvement partners with health care

professionals.’’ In addition, participants were

given an opportunity to ask questions about

the procedures before the focus group began.

RESULTS

Narrative Review

The PubMed search identified 810 articles on

patient partnerships and the Ebsco search

identified 139, with 6 duplicates. We identified

1420 Adv Ther (2016) 33:1417–1439

149 additional articles from partners’

suggestions or other citations for a total of

1092 abstracts reviewed. Most exclusions were

for a focus on clinical encounters (e.g., shared

decision-making), input that did not meet the

partnership criteria (e.g., completing a survey),

or solely pediatric or inpatient settings.

Thirty articles discussed 26 studies or

examples of patient/family partnerships in

ambulatory care QI. Overlap between studies

included, in particular, patient partnerships in

PCMH demonstrations and the Robert Wood

Johnson Foundation Aligning Forces for Quality

initiatives, which were described in more than

one paper. Most articles (17) were case studies

(Table 1).

Most studies reported on patient

partnerships in QI or advisory committees,

although [13] described patients and families

serving on clinical practice guideline

committees and [14] reported on periodically

hiring patients part-time to assist with

peer-support activities, focus groups and

wellness programs. Examples of specific

activities by patients on standing committees

included strategy development [15], staff

interviews [16], input on improvement

projects [17] and workflow development [18].

In three studies [19–21], practice improvement

efforts were part of regional healthcare

planning efforts and patient/family partners

helped identify local priorities. Many programs

incorporated patient/family partners into

existing healthcare system functions, such as

established committees and program material

review. However, several designed new

mechanisms specifically for partnership and

co-design [19, 22–25].

Many articles reported that patient/family

partnerships resulted in process improvements,

including staff trainings [22, 26], service

redesign [16, 17, 21, 27, 28], and patient

materials (e.g., for self-management or new

patient orientation) [18, 29–31]. Several

articles said patient/family involvement

catalyzed practice improvement through

‘‘influential stories,’’ ‘‘different perspectives’’

[26] or ‘‘experiential knowledge’’ [32]. In

addition to improving organizational

processes, several articles said patient

partnerships benefited patients directly by

encouraging deeper communication with

providers and motivating improvement and

management of personal health [14, 15, 31].

No study reported changes in clinical outcomes

associated with engaging patient partners,

although three [17, 33, 34] reported

correlation with improvements in

quality-of-care process measures, including

health coaching and care coordination.

Promoters and barriers for participating

patients/families and practices are summarized

in Table 2. For patients and families, facilitators

included clearly defined processes, for example

length of participation, confidentiality and

privacy, training, ongoing communication and

facilitation to ensure meaningful participation,

and compensation. For practices,

implementation facilitators included aligned

values, practice cultures and policies. Previous

experience or technical assistance on

implementing patient partnerships was also

cited as helpful.

Practice challenges can involve

organizational and staff uncertainty about

how to work with patients on QI and benefits

of patient partnership. Practices may have

concerns about burdening patients and

ensuring representative voices. Challenges are

compounded by competing demands in

healthcare, leading to practices either not

considering patient partnerships for QI or

perceiving partnerships as work that cannot be

accommodated because of resource constraints.

Adv Ther (2016) 33:1417–1439 1421

Table1

Patientandfamily

partnerships

inam

bulatory

qualityim

provem

ent,by

studytype

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

Randomized

trials

Boivin,

Lehoux,Lacom

be,etal.

[19]

/Boivin,

Lehoux,Burgers,

Grol[37]

RegionalHealth

Authority

in

Canada

2-daydeliberationmeetingswithpatients

prioritizing

37optionsfor

commun

ity-levelchroniccare

‘‘Attheendof

thetrial,intervention

sites’

priorities

identifiedby

patientswith

professionalsweresignificantlydifferent

from

controlsites’priorities

identifiedby

professionalsalone’’

Surveys

Han

etal.[8]

USPC

MH

practices

Suggestion

boxor

otherad

hocmethod;

patientandfamily

surveys;qualitative

inputfrom

individualsor

smallpatient

groups

throughinterviews,group

meetings,or

clinicobservations;ongoing

participationin

QIteam

sor

patient/family

advisory

coun

cils

Morepracticesused

partnershipfeedback

to

alertaboutpotentialproblemsvs.seeking

inputaboutsolutionsor

improvem

ents

Scholle

etal.[9]

USPC

MH

practiceswith

fewer

than

5physicians

Patientson

QIcommittees

orPC

MH

transformationteam

sin

15.5%

of

practices

Nospecificresults

reported

Qualitativestudies

Browne

etal.[14]

Twoprim

arycare

centersin

poor

urbanCanadian

neighborhoodsserving

marginalized

populations

Patientsperiodicallyhiredpart-tim

eto

assist

withpeer-supportactivities,focus

groups

andwellnessprograms;andresearch

(e.g.,

asinterviewers)

‘‘Participatory

engagementof

patientscan

take

manyform

sandPH

Corganizations

canplay

arolein

providingasenseof

meaningfulbelongingness,for

exam

ple,by

providingpaid

orvolunteeropportun

ities

includingpeer

supportprograms’’

1422 Adv Ther (2016) 33:1417–1439

Table1

continued

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

Caplanet

al.[22]

Universityof

Wisconsin

prim

arycare

deliverysystem

Patientengagementtraining

program

developedduring

overallredesign

efforts

included

coachandteam

mem

ber

curricula,educationandstep-by-step

how-toguides,tools,

andtemplates.

Created

a5-levelfram

eworkforpatient

involvem

ent,withlevel5beingactive

partnership.

Of47

team

s,58

engaged

patients(level-5

numbernotspecified)

‘‘Deepenedourconviction

that

involving

patientsin

theplanning,d

evelopment,

andtestingof

clinicalim

provem

entsis

essentialfor

improvingqualityandsafety’’

Carret

al.[26]

9practicesin

2

South-of-England

trusts

Patientsparticipated

ineighthalf-day

continuing

medicaleducation-type

workshops

over

9monthsandfacilitated

projectmeetingsaboutback-pain

managem

entforprim

arycare

team

s

Viewed

ascatalystforprovider/staff

behavior

change,shiftingperspectivefrom

medicalto

biopsychosocialmodeland

increasing

likelihoodof

motivating

practice

change

comparedto

giving

professionalsinform

ation.

Participation-influencedsubthemes

were

‘‘influentialstories’’and‘‘different

perspectives’’

Luxford

etal.[16]

8UShealth

care

organizations:

5/8am

bulatory

Patient/family

advisory

committees

and

board-of-trustee

representation,Q

I

committees,employee

interviewpanels

andmedicalexecutivecommittees.

Activitiesincluded

involvem

entin

organizationaldecisions(e.g.,service

redesign

andstaff-interviewpanels)

and

point-of-careengagement(e.g.,partnersin

care;inclusion

inhand

offs;2

4/7pointof

access)

‘‘Interview

eesin

fiveoutof

eight

organizationscitedtheengagementof

patients,fam

ilies

andcarersas

acritical

strategy

forprom

otingpatient-centered

care.’’Acute

inpatientfacilitiesreported

moreextensiveengagement

Adv Ther (2016) 33:1417–1439 1423

Table1

continued

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

Renedoet

al.[15]

CLAHRC

NWL

CLAHRC

NWLenvisioned

patient

participationin

QIbecomingnorm

al

practice

acrosslocalhealthcare

context;

fund

ed,trained,and

supportedindividual

team

sof

8–10

multidisciplin

aryfrontline

stafffrom

NationalHealth

Service

organizationscond

ucting

QIinitiatives.

Patientsinvolved

instrategy

developm

ent

andongoingim

provem

entevents

Patientsdevelopedasenseof

belongingand

agency

ininteractingwithhealthcare

professionals:’’from

beingpassive

recipientsof

healthcare

tobecoming

active

participantsin

service

improvem

ent’’

Reviewarticles

Hubbard

etal.[41]

Researchandcare

planning

effortsinvolving‘‘people

affected

bycancer’’

Multipleactivities

including‘‘one-off

involvem

entexercises’’and‘‘user

involvem

entpartnerships’’in

policyand

planning

Nospecificem

piricalfin

dingsreported

Morrowet

al.2

013[32]

Mechanism

sforpartnership

around

chronicdiseasecare

Advisorygroups

and

patient-experience-based

approaches

to

servicedesign

that

linkprovidersto

commun

itynetworks

andsupport

‘‘perspective

sharing’’

includingpatient

inputon

agenda

‘‘Experientialknow

ledge’’

shapes

relevant

questionsandim

provem

entapproaches

1424 Adv Ther (2016) 33:1417–1439

Table1

continued

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

Casestudies

Angstman

etal.[17]

MayoClin

ic,U

S‘‘Patient

advisory

group’’(defin

edas

involved

inlong-term

patient-centered

processes)in

place5?

years.Twelve

mem

bersareMayopatientsor

parents

interested

inim

provingclinichealthcare,

volunteeredor

selected

bymedical

director;othersaremedicaldirector

and

administrator.M

eetsquarterly

Mission

statem

ent:‘‘Toestablishapatient

advocateforumto

gain

qualityexperiences,

observations,and

suggestionsfor

improvem

ent’’

Activities:review

practice

improvem

ent

projectfordepression

care

managem

ent;

provideinsightson

scalingpatientaction

groupto

entire

Rochester,M

Nprim

ary

care

practice

Produced

morepatient-centered,

personal-handoffprocessandassociated

provider

scripting(e.g.,from

‘‘som

eone

will

callyou’’to‘‘the

care

manager

isan

RN

who

works

withme’’).Enrollmentof

patientsdiagnosedwithdepression

into

care

managem

entintervention

was

96.5%

Baker

etal.[29]

USCareSouth

outpatient

clinics

Educationalmaterialdesign

around

body

massindexafternegative

initialfeedback

regardingtopicapproach;revisedpain

assessment

‘‘Astrong

collaborative

engagementwiththe

patientislikelynecessaryto

achievehigh

reliability’’

Bittonet

al.[27]

Hospital-and

commun

ity-basedprim

ary

care

teaching

practices

affiliatedwithHarvard

MedicalSchool

Clin

ic‘‘transform

ationteam

s’’encouraged

toincludepatientsas

core

mem

bers

‘‘Traineesandpatientscanbe

agentsof

change,and

theirpresence

providesadded

motivationforacadem

icfaculty

tocreate

andsupportchange’’

Adv Ther (2016) 33:1417–1439 1425

Table1

continued

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

CoulterandElwyn

[20]

UK

policyeffortsto

involve

publicin

healthcare

processes

Com

mun

ity-health

coun

cils,

proposed

statutorypatientforumsandcommission

forpatientandpublicinvolvem

entand

health,p

atient

advisory

andliaison

services

ineach

trust,annu

alpatient

survey

Noem

piricalfin

dingsreported

DiGioiaet

al.[23]

Universityof

Pittsburgh

MedicalCenter,US

6-step

patient-andfamily-centeredcare

methodology

includingusingCodesign

ToolkitandIm

provem

entTeam

toclose

gaps

betweencurrentandidealcare

experiences

‘‘Refocuses

existing

resourcesaround

the

patientandfamily

rather

than

fitting

patientsandfamiliesaround

thephysician

andsystem

.Itmakes

itpossibleto

take

anycurrentstateandmovethecare

experience

towardtheideal—

asdefin

ed

bypatientsandfamilies’’

Fontaine

etal.[28]

Minnesota

prim

arycare

practices

StatePC

MH

certification

standard

developm

entincluded

patient-advocacy

representatives;publishedstandards

include‘‘continu

ousim

provem

entprocess

that

included

aquality-im

provem

ent

committeewithactive

patient

recruitm

entandparticipation’’

Patient’s

positive

experienceswithPC

MH

increasedpractice

leaders’jobsatisfaction

andtrustin

theprocess

Processforusingpatientsas

PCMH

advisors/getting

inputon

PCMH

changes

from

patientpartnerson

change

team

all

correlated

significantly(P

B0.01)with

practice

system

change

(but

notclinical

outcom

es)[33]

Karazivan

etal.[24]

Direction

ofCollaboration

and

PatientPartnershipat

the

Universityof

Montreal:

Implem

entedby

twoprim

ary

care

team

sas

of2014

Accom

pany

clinicalteam

sin

implem

entation

ofcare

partnership

continuous

improvem

entapproach

Resultsnotyetavailable

1426 Adv Ther (2016) 33:1417–1439

Table1

continued

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

Loudet

al.[30];also

describedin

Arm

strong

etal.[38]

Prim

arycare

forpeoplewith

CKD

inUK

Patientadvisory

groupactivelyparticipated

inQIplanning

includingconference

calls

withparticipatingpractices;designed

patient-outreach

andsupportmaterials

Production

ofpersonalcase

studiesand

suggestion

son

explaining

CKD

from

patientperspectiveto

supporthealthcare

professionalsin

explaining

theprojectto

patients.P

roductionof

patient-support

tools(e.g.,CKD

inform

ationbookletfor

patients).Co-design

anddeliveryof

practitionertraining

onsupporting

people

withCKD

inself-managem

ent

MarshallandNelson[13]

CFFoun

dation

QI,laun

ched

in2002

Patient/family

advisory

boards

atCFcare

centers,patients/fam

ilies

onclinical

practice

guidelines

committees.P

rovide

inputon

improvem

entopportun

ities

‘‘Enrichedtheim

provem

entworkand

motivated

theclinicians.’’Patientsand

families

received

center-levelaccessto

outcom

emeasuresbecause‘‘it

became

clearthatitwastherightthingto

doand

itwould

likelyhelp

usaccelerate

improvem

ent’’

Millensonet

al.[34]

Mercy

Clin

ic,U

S;also

describesUniversityof

Pittsburgh

MedicalCenter’s

Patient-and

Family-CenteredCare[23]

PatientAdvisoryWorkgroupson

Qualityat

everycliniclocation.P

atientscomment

onongoingim

provem

entplans.‘‘Patient

inputsometim

escontradicted

doctor’s

expectations;forexam

ple,physicians

thoughtpatientswould

beupsetabout

depression

screening,yetnotasingle

patientobjected’’

Led

tostudyof

chroniccare

self-managem

entshow

ing‘‘patientsand

clinicians

werespeaking

2different

languages.’’L

edto

training

health

coaches

inmotivationalinterviewingdirectly

relatedto

patientwantsandneeds.

Trainingprogram

nowinstitutionalized.

Health

coachprogram

hadfin

ancial

benefits

Adv Ther (2016) 33:1417–1439 1427

Table1

continued

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

Minnitiet

al.[21]

Collaborative

partnerships

on

theOregonMedicaid

population

involving

Oregon’slegislature,the

OHA,state

MAC,

NorthwestHealth

Foun

dation,C

areO

regon,

commun

itygroups,care

providers

OHAtask

forces

advanced

patient-centered

prim

arycare

homes

toexplorebest

practicesin

patient/family

engagement.

Individualsandfamilies

included

asequal

mem

bers.D

eveloped

Patient-Centered

Prim

aryCareinstitute,assembling

technicalexperts,providers,staff,patient

advisors,p

olicym

akers,academ

iccenters,

andotherstakeholdersto

sharepractice

transformationknow

ledgeandresources.

CACsrequired

toworkwith

Medicaid-coordinatedcare

organization.

CACshave

16–2

0mem

bersrepresenting

ageographicarea;at

least51%

mustbe

clientsor

family

mem

bersreceiving

Medicaidservices.C

areO

regon

establishedamem

beradvisory

coun

cil

CareO

regon’sadvisory

coun

cilim

proved

internalprocesses,helped

expand

dental

coverage,and

startedpartnerships

inthe

broaderhealth

care

commun

ity.

Developed

theBetterTogetherguideto

help

CareO

regonmem

berspreparefor

clinicvisits.C

onversations

withOregon

legislature

influencedestablishm

entof

CACsandmandate

toincludeMedicaid

beneficiaries

inthecreation

andongoing

operations

ofCoordinated

Care

Organizations

MorrisonandDearden

[25]

CLAHRC

programmefor

Sheffield.B

OSO

P

Team

used

participatorydesign

methods

so

olderpatientsandstaffrepresentatives

couldcollaborate

todriveim

provem

ents

Creationof

design

proposalsthat

incorporated

patientperspectives

and

experiences

1428 Adv Ther (2016) 33:1417–1439

Table1

continued

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

Rosem

anet

al.[31]/Scanlonet

al.

[39]

Four

US-basedprograms:one

isOregon’ssetof

patient

advisorprograms,(M

inniti,

above);othersareHum

boldt

coun

ty,replicated

inSouth

CentralPenn

sylvania;and

Maine

Aligning

Forces

for

Qualitypilotsites

Hum

boldt:PatientPartnersrecruitedfrom

patientswho

completed

alocalchronic

diseaseself-managem

entprogram

and

othersources.Periodicmeetingsare

throughout

theyearwithregularmeetings

ofthefullcollaborative

including

providersandstaff.Helpeddevelop

brochuresandevaluate

onlin

eportals;

‘‘serve

asrolemodelsandworking

to

improvecare

forallpatientshave

prom

pted

patientpartnersto

become

even

moreactive

intheirow

ncare’’

PAPa

rtners:adaptedHum

boldt’s

program;

focusedon

patientcommun

icationand

self-managem

ent

Maine:Allpilotsiteshadpatientadvisors.

Maine

createdaPatientFamily

Leadership

Team

in2010

toprovidesupportto

pilot

practices,sinceabsorbed

into

other

initiatives

Hum

boldt:‘‘H

avingthePatientPartnersat

thetablemeans

thereason

forthisworkis

frontandcenter

foreverydiscussion’’

SouthCentral

PA:Patientsmoreactive

in

theirow

ncare;sparking

processchanges

that

improvepatientandstaffsatisfaction

Maine:‘‘Practice’spatientadvisory

coun

cil

hasshifted

providers’focusfrom

‘what’s

thematter?’to

‘whatmattersto

you?’;

helped

identify

practice

mattersof

highest

priority

topatients;im

proved

patient

experience

scores

Rubensteinet

al.[40]

6prim

arycare

practicesin

US

VeteransAssessm

entand

Improvem

entLaboratoryfor

Patient-CenteredCare

Patientrepresentativesin

QualityCouncils

andfivetopic-focusedworkgroups.Only

oneworkgroup

included

apatient

representative

Nospecificem

piricalfin

dingsreported

Adv Ther (2016) 33:1417–1439 1429

Barriers for patients/families included lack of

interest, time, training, and comfort with

participating or training. Language and

cultural differences and lack of trust in the

medical system were a challenge for some [8].

Focus Group Findings

Of 10 patient/family practice advisors in the

focus group, 8 advised in primary care settings

and 2 in outpatient specialty care settings. Eight

advised for at least 2–5 years and 2 for more

than 5 years. All worked in urban settings: 4 on

the West Coast, 2 on the East Coast and

Midwest, and 1 each in the Rocky Mountain

and Gulf Coast regions. Two were under

55 years, 3 were 55–64 years, and 5 were

65 years or older.

Becoming a practice advisor

Two participants became involved based on

family caregiving. One had a child with a

serious medical condition: ‘‘I got involved

because it was so difficult to get access to good

care and get quick access because I needed

emergency services a lot, that’s why they asked

me to do it because I was always in the system.’’

Several expressed desire and enthusiasm to

serve the community and make the healthcare

system work better for patients, for example:

‘‘The reason I do these things is because I

also receive Medicaid and I am so grateful

to have that, that I want to do something

to pay back.’’

Several participants were invited by their

doctors to become practice advisors. Two were

retired healthcare professionals. One said: ‘‘In

my previous life I was a nurse practitioner […]

and then after I retired, I became a patient for

20 years so I feel like I have experiences on both

sides of the table.’’Table1

continued

References

Setting

Patient/fam

ilypartnershipactivities

Partnership

outcom

es

StoutandWeeg[18]

Cam

bridge

Health

Alliance,

US

Processim

provem

entteam

included

2

patients.T

eamschargedwithspreading

innovationsbetweencare

team

sand

developing

workflow

s

Inputfrom

frontline

staffandpatients

accelerateddevelopm

entof

workflow

and

toolsaccepted

andused

bycare

team

s.

‘‘Thisallowed

solutionsto

take

holdmore

rapidlythan

inprevious

improvem

ent

efforts’’

BOSO

Pbetteroutpatient

servicesforolderpeople,C

ACcommun

ityadvisorycoun

cils,

CFcysticfibrosis,CKDchronickidn

eydisease,CLAHRCCollaborationsfor

Leadershipin

AppliedHealth

ResearchandCare,MAC

MedicaidAdvisoryCom

mittee,NWL

NorthwestLondon,

OHA

OregonHealth

Authority,PC

MH

patient-centered

medicalhome,PH

Cprim

aryhealthcare,Q

Iqualityim

provem

ent

1430 Adv Ther (2016) 33:1417–1439

Table2

Facilitatorsandchallenges

topatient/family

partnerships

inam

bulatory

qualityim

provem

ent

Perspective

Facilitators

Challenges

Patient/family

Clearlydefin

edparticipationguidelinesandexpectations

viaroledescriptions,com

mitmentlength,group

purpose,directive,and/or

mission

statem

ent

[17,

30,3

1]

Confidentialityaddressed,

e.g.,signedstatem

entor

agreem

ent,ground

-rules

discussion

[17,

26,3

0]

Preparatoryor

ongoingtraining

tohelppatientsactively

participate[26,

41]

Skilled

facilitators/facilitationtechniques

[17,

19,2

5,26,3

7]

Appropriatelysizedgroups

tofacilitatediscussion

(smaller=

lessintimidating)

[17,

19]

Regular

commun

icationto

keep

patientsfeeling

involved,d

eepenrelationships,andprovidefeedback

onhowpracticesused

patientinput[17,

22,3

0,41]

Sessions

provideopportun

itiesforlearning

andfunfor

patientsandproviders[26]

Com

pensationforparticipants(honorarium

fortime

and/or

reim

bursem

entfortravelexpenses,m

eals,

and

child

care)[14,

19,2

6,30,3

1]

Languagebarriersandcultu

raldifferencesleadingto

or

alongwithskepticism

andlack

oftrustin

medical

system

may

reduce

patientlikelihoodof

engagementin

QI[8]

Partnershipactivity

descriptions

may

notappealto

patients(e.g.,‘‘program

’’)[8]

Uncertainty

aboutroleanddiscom

fortaboutspeaking

forotherpatients[32]

Lackof

training

[40]

Tim

efortraining

andparticipation[40]

Adv Ther (2016) 33:1417–1439 1431

Table2

continued

Perspective

Facilitators

Challenges

Practice

Practice

values

andcultu

resupportpartnership,

including:

Viewingpartnershipas

integralto

practice

design

and

qualityassuranceandim

provem

entefforts;

[8,1

5,18,2

2,23,2

6,34]

Recognizing

that

patientpresence

motivates

change

[13,

31];

Being

comfortablewithun

certaintyof

innovation

and

matchingpartnershipactivities

withorganizational

readiness[22,

34];

Getting

active

supportfrom

leadership

andproviders,

includingdedicatedtimeandpersonnel,and

[18,

22,2

8,31,3

4,41]

Com

mitting

totranslating

findingsinto

action

[15]

Policiesthat

mandate

orencouragepartnershipthrough

financialincentives

topracticesor

providers,reporting

ofkeymetrics,p

erform

ance

measures

[8,1

4,20,2

1,23,2

8,31,3

7]

Implem

entation

ofpartnershipfacilitated

by:

Priorexperience

withpatientpartnerships

(e.g.,patient

advisory

coun

cils)

[28];

Techn

icalassistance

forpractices[22,

31];

Recruitmentstrategies

that

identify

diversepotential

participantsandencourageinvolvem

entin

partnership

activities

[19,

30,3

1,37],and

Sessions

that

areenjoyableforpatientsandproviders

[26]

Uncertainty

abouthowto

workwithpatientson

QI

[9],howto

respondto

oracton

feedback

from

patient

partners[8],organizationalcapacity

todeliver

change

[32],and

sustainabilityof

partnerships

[40]

Reactivenature

ofhealthcare

system

scanhind

er

partnering

withpatientsat

planning

anddesign

stages

[20]

Perception

that

patientpartnershiptimeandcostsare

notfeasiblegivencompeting

priorities

[19,

22,2

6,31,3

4]

Practicesconcernedaboutburdeningpatientswithtoo

muchresponsibility[20]

Avoiding‘‘tokenism,’’recruiting

diversepatientsfora

balanced

view

pointthat

representstheentire

patient

group[14,

20,2

5,31,3

7,41]

Lackof

evidence,b

estpractices,or

experience

to

convince

skepticalprovidersandotherstakeholdersof

patientengagementvalue[8,9

,22,

31,3

4]

1432 Adv Ther (2016) 33:1417–1439

Commitment and Compensation

Most advisors were part of the practice’s

standing QI committee, which typically met

monthly for 1–2 h and generally involved

from 5 to 15 patient advisors, physicians and

staff. One participant reported a system with

three advisory councils, one focused on needs

of Spanish-speaking patients. Some

participated in activities beyond meetings:

one worked directly with patients as a

patient advocate; another was extensively

involved, with activities from legislative

testimony to self-management training; and

another worked at the clinic level, on a

system-wide council and co-chair

participating in executive-level meetings

with organization leaders. One advisor

reported compensation for gas and

committee participation time. None received

honoraria.

Infrastructure and Support

The committees in which the practice

advisors participated were often coordinated

by a staff responsible for meeting and

communication logistics, sometimes in a

dedicated role and sometimes within a

larger job. Staff oriented new advisors and

supported them between meetings. A staff

liaison to follow-up on meeting items was

mentioned as important.

Three advisors received training for their

role. One received the same orientation as the

organization’s employees. One received an

individual orientation. Another received

ongoing training through conferences and

other activities. No other participants

reported training. One explained, ‘‘We kind

of just went by the seat of our pants because

all of us have been patients there for many

years.’’

Advisor Roles and Activities

Patient/family advisor roles included reviewing

and providing feedback on written materials for

patients (e.g., newsletters, orientation packets)

and contributing to the organization and flow

of patient visits from a patient-experience

perspective. For example:

We focus on improving the patient

experience through quality improvement.

We focus on educating patients on

preventive care and services, and we

create in subcommittees with [practice]

staff and their health education

department, posters, brochures. We’ve

done a video on the medical home. And

then also I serve on the neighborhood

clinic.[…] I’ve observed the lobby, rooming

and met with various physicians in the

different teams, just observing and asking

questions, and from that we’ve created

projects and they’ve made tweaks in the

way they do their processes in the clinic

level.

We actually gave the critical considerations

in selection of the [patient electronic

health information] portal. So we didn’t

decide which portal they were going to use,

but we said these are critical questions that

should be asked to the developer of the

portal about how to comply with the

variety of needs.

Other described eliciting patient feedback

through comment boxes or one-on-one

conversations, advising on executive-level

agendas to ensure consideration of patient

perspectives, and helping with the practice’s

community engagement efforts, including

Medicare enrollment and food banks. At one

clinic, patient advisors helped develop grants

for new initiatives, for example a proposal to

Adv Ther (2016) 33:1417–1439 1433

acquire clinic furniture for patients and

families.

Practice Advisor Perspectives on Benefits

and Challenges

Patient advisors indicated that they were

involved because their efforts resulted in

tangible differences in patients’ care

experiences. For example:

[I value being] in a position to address

issues with staff and physicians and to

serve with other council members so that

we can make contributions in this area.

We’ve seen quite a few changes that have

come out of our participation in this

council.

Participants generally described positive

experiences working with clinicians and staff

with opportunities for bidirectional learning.

Staff, physicians and the people that have

been chosen for our council by the doctors

really do seem to care and there is a core

group that attends regularly and it does

provide us with consistency.

So the doctor came and said ‘‘all right, how

can we assure these patients got their

follow-up instructions, got their

medications, know how to take their

medications, know that we have an

appointment, for just even the doctors to

know that the patient has been in the

hospital and was discharged from the

hospital?’’ So we worked on that, and I

think it was very helpful for the staff to

bring issues to us that they felt we could

help them with.

Challenges and suggestions regarding

working with clinicians and staff included the

healthcare system’s concern about

confidentiality. Some participants said

clinicians were not sufficiently aware of or did

not spend enough time with patient advisory

councils; however, the discussion focused on

inviting clinicians and staff to join meetings

and opportunities for relationship building.

Patient/family partnerships can mean shifting

organizational culture, which can be

challenging.

I think sometimes the providers were

hesitant to talk about some of the things

within the clinic.

The materials coming out of the offices are

me-oriented. For example we’ll have a

publication that says ‘‘we now have such

and such service’’ and I’m trying to get the

mindset changed so it comes from the

patient’s point of view, and it’s a little

struggle.

The participants discussed getting broader

input from a range of patients and families.

Recommendations included incentives and

publicity around input opportunities and

committee term limits so new people can join.

We don’t have a direct way for patients, if

they so choose, to send concerns to the

advisory board.

I think everybody deals with how to recruit

more people. One meeting we talked about

term limits, that got a rise from some of

our senior members, but basically that is

tied into recruitment. […] We’re

consistently seeking new capable people

to join the advisory boards.

DISCUSSION

This paper summarizes mechanisms for patient

and family partnerships in ambulatory care QI,

1434 Adv Ther (2016) 33:1417–1439

with outcomes, facilitators and challenges. In

addition to involvement in standing QI

committees and advisory councils, we

identified efforts to include practice advisors

in clinical guideline review committees, system

transformation initiatives, and innovative

practice redesign.

Facilitators for partnering with patients and

families for QI in ambulatory settings included,

for patients, identifying a shared purpose and

clearly defined guidelines for participation.

Providing orientation can ensure that advisors

feel involved and valued. Addressing

confidentiality and ground rules with practice

advisors supports open and productive

discussion and trusted communication. For

practices, facilitators were clearly articulated

support and commitment from leadership,

including dedicated time and personnel, and

comfort with uncertainty and innovation.

Partnership implementation can be facilitated

through technical assistance, policies that

support partnership, and recruitment strategies

that identify appropriate participants.

Challenges for patients and families included

the time for training and participation. Patients

indicated discomfort with speaking for other

patients and uncertainty about their role. For

practices, barriers included perceptions that

partnership time and costs were not feasible

given competing priorities. Practices sometimes

questioned the value of patient engagement

given lack of evidence and experience.

Uncertainty about how to work with patients

and families in QI and how to act on feedback

were also challenges.

Our results offer insights on partnership

benefits to practices. Articles and focus group

participants reported that partnerships improved

processes. Preliminary findings from inpatient

experiences support that including

patient/family advisors in improvement

initiatives may improve processes and

potentially even improve quality and safety

and reducing costs [35]. With providers under

increasing demands, patient/family partnerships

might enhance clinician job satisfaction. For

example, in an Aligning Forces for Quality

initiative, one practitioner remarked, ‘‘Engaging

patients is the hardest core expectation but the

most fun’’ [31]. Partnerships are also meaningful

for patients, for example providing a sense of

‘‘meaningful belongingness’’ [14]. Thus,

although some practices may perceive patient

partnerships as prohibitively time and cost

intensive, partnership benefits may offset their

required time and resources by guiding practice

decisions to be responsive to patient/family

needs and priorities.

Coulter [48] noted that evidence to guide

patient engagement is widely dispersed among

multiple disciplines and journals. We

synthesized and expanded previous

publications on the scope, facilitators and

challenges of patient partnerships in

ambulatory care. The findings—including how

the perspective and experiences of patient and

families can catalyze improvement, and the

need for guidance and training for practices and

practice advisors alike—are consistent with

previous analyses from inpatient and pediatric

PCMH settings [11, 42–45]. However, the

present analysis identifies partnership

activities, barriers and challenges that are

specific to the ambulatory care setting, for

example related to practices’ workflow and

incentive structures. Strengths of this study

include incorporating expertise from

organizations and individuals experienced in

patient/family QI partnerships. This expertise is

reflected in published and unpublished

materials included in the narrative review, as

well as focus group findings. Several identified

resources are shown in Table 3.

Adv Ther (2016) 33:1417–1439 1435

Limitations of this study include a small

focus group sample that may not be

representative. Literature review results include

learnings from other countries, which might

not apply to the United States. Our conclusions

about patient and family partnership outcomes

are limited given that we identified only one

randomized trial about policy and practice in

Canada; however, findings from this trial and

other higher quality studies were similar to

findings from case studies. In addition, the

concordance of findings between the focus

group and the narrative review helps support

the validity of the research from each method.

Ambulatory practices are increasingly inviting

patients and families to participate in QI efforts.

These efforts are enabled by the rapidly evolving

healthcare landscape that incentivizes patient

and family engagement in care and

improvement, and new techniques to build

capacity for patient partnerships in QI,

including experience-based design [36]. We

encourage the continued sharing of outcomes

and best practices for creating and sustaining

these important partnerships.

ACKNOWLEDGMENTS

We are grateful to the focus group participants

for their work as practice advisors and for the

time they took to share their insights with us.

We are also grateful to Barb Forss for her

insights as a patient advisor and review of the

manuscript. This project was funded by the

Gordon and Betty Moore Foundation. All

named authors meet the International

Committee of Medical Journal Editors (ICMJE)

criteria for authorship for this manuscript, take

responsibility for the integrity of the work as a

whole, and have given final approval for the

version to be published.

Disclosures. The authors are employed by

organizations focused on healthcare

improvement; however, Karin E. Johnson,

Tracy M. Mroz, Marie Abraham, Marlaine

Figueroa Gray, Mary Minniti, Wendy Nickel,

Robert Reid, Jennifer Sweeney, Dominick L.

Frosch, Debra L. Ness, and Clarissa Hsu have

declared no specific financial conflict of

interest.

Compliance with Ethics Guidelines. The

Group Health human subjects review office

determined that the procedures were exempt

from IRB review. US regulations pertaining to

human subjects research include provisions for

exemption from Institutional Review Board

review when research involves interviews that

are deidentified [46]. Because the focus

group occurred over the phone, no consent

forms were collected. However, as noted in the

focus group guide, participants were informed

Table 3 Sample resources for patient and familypartnership in ambulatory care quality improvement

A Roadmap for Patient and Family Engagement in

Healthcare Practice and Research

www.patientfamilyengagement.org

Aligning Forces for Quality

forces4quality.org

Institute for Patient- and Family-Centered Care

www.ipfcc.org/advance/topics/primary-care.html

Patient Engagement in Redesigning Care Toolkit

www.hipxchange.org/patientengagement

Patient-Centered Primary Care Collaborative Patients,

Families, and Consumers Center

www.pcpcc.org/patients-families-consumers

Team Up for Health

www.teamupforhealth.org

1436 Adv Ther (2016) 33:1417–1439

that participation was voluntary, quotes would

be made anonymous, and that their insights

will help ‘‘in sharing what really works to

support patients and families in the role of

advisors as improvement partners with health

care professionals.’’ In addition, participants

were given an opportunity to ask questions

about the procedures before the focus group

began.

Open Access. This article is distributed

under the terms of the Creative Commons

Attribution-NonCommercial 4.0 International

License (http://creativecommons.org/licenses/

by-nc/4.0/), which permits any noncommercial

use, distribution, and reproduction in any

medium, provided you give appropriate credit

to the original author(s) and the source, provide

a link to the Creative Commons license, and

indicate if changes were made.

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